Facing Autism in New Brunswick

Wednesday, October 14, 2015

Andy Scott called for a REAL National Autism Strategy that would ensure treatment for autism 12 years ago, Munson, Thibeault, and Stoffer have continued the fight tirelessy. Will October 19 bring Canadians a government prepared to make it happen?

Some good work has been done during this current election campaign in drawing politicians attention to the need for a REAL National Autism Strategy. The Medicare for Autism Now's 1 in 58 campaign has produced considerable discussion in a number of selected ridings. In Saskatchewan Shannon Hill and the PAAT group have engaged federal and political politicians. Hopefully the government elected October 19 will do more than shell out money for a do nothing committee with no serious mandate like the Harper Party did during the past year. The Green, NDP and Liberal Parties have all expressed some support for a National Autism Strategy that includes efforts to ensure that evidence based ABA treatment for autism will be covered by Medicare across Canada as Andy Scott called for 12 years ago.

Following is text from a commentary I posted in 2010 which records Andy Scott's call as reported by Tali Folkins in the Telegraph Journal and also acknowledges the tireless efforts of Senator Jim Munson, Nova Scotia NDP MP Peter Stoffer and former NDP MP Glenn Thibeault as reported by MetroNews.ca.

Canada does not have a real national autism strategy but it is not for lack of trying by some dedicated federal politicians including Liberal Senator Jim Munson and NDP MPs Glenn Thibeault and Peter Stoffer who have renewed calls for a real National Autism Strategy for Canada.

The struggle for a National Autism Strategy began many years ago including here in New Brunswick where Andy Scott issued a public call for a National Autism Strategy on October 18 2003:

""Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Tali Folkins, Telegraph Journal, October 20, 2003

Mr. Scott was successful in getting a commitment by the federal government to a National Autism Strategy recognized in principle but the strategy at that time did not commit to the hard action necessary to provide assistance to all parts of Canada in providing early autism intervention programs. Even the National Autism Symposium which came out of that commitment was a sham, pure and simple, a sham. Public autism advocates, including me were excluded from the Symposium. Those in attendance were all screened by federal health agency involved with organizing the event to ensure that they would go along with the government's do nothing to help autistic children agenda.

Senator Munson has been literally crossing the country for several years fighting for a real national autism strategy and he has not given up on his efforts. He organized and spoke in Ottawa yesterday at an event to mark World Autism Awareness Day this Friday, April 2, 2010:

“There’s no reason why we cannot treat autism within our own communities equitably across the nation,” said event organizer Senator Jim Munson. “There is a crisis and I know that we can come up with a plan to deal with the issue that is so important to all of us.”

MetroNews.ca, Ottawa, March 31, 2010

The event was also co-hosted by NDP MP's Glenn Thibeault and Peter Stoffer who spoke at the event. Mr. Thibeault also introduced a private member's bill, seconded by tireless autism advocate Peter Stoffer, to create a real national autism strategy, one that would actually help autistic children and their families by having the federal government work with the provinces:

"“Autism doesn’t discriminate based on geography. It’s time for federal leadership to ensure that no matter where a child is born with autism, they receive equal treatment and services of the highest caliber.”

Glenn Thibeault, March 30 2010

“I’m very pleased that my colleague has done this. We’ve been asking for many years for the federal government to work with the provinces to develop a national autism strategy. I hope this will become a reality in the near future.”

Saturday, October 10, 2015

The picture above was taken a few days ago. I believe anyone can look at the picture and see the happiness on my 19 year old severely autistic son Conor's face. What is truly remarkable is that his happiness has been a constant feature of his life despite the very severe challenges that he faces with severe autism, intellectual disability (like 50% of persons with autism), epileptic seizures, life threatening adverse reactions to some seizure meds and self injurious behaviors. What is perhaps even more remarkable is that Conor's happiness has been a constant in his life even without his parents listening to or giving any weight whatsoever to the opinions of self annointed autism experts like John Elder Robison, Ari Ne'eman, Shannon Des Roches Rosa, Jim Sinclair, Michelle Dawson, Steve Silberman or any of the other persons who attack parents for speaking honestly about their child's severe autism disorders and who actually support efforts to find cures and treatment for their autism disorders.

The following are pictures of my happy son Conor thoughout his life although not in chronological order. We didn't follow or need the advice of the army of neurodiversity activists who are actually arrogant enough to believe that they know better than parents how to raise, care for and love their own children. I have never hidden my disdain for their attempts to impose their so called self advocacy on other people's children. When I see my son who struggles with far more severe challenges than the self advocates who want to rule the autism world and yet is still happy and loved by those who know him I am very glad that I do not subscribe to their ideology.

Wednesday, October 07, 2015

I have been engaged in autism advocacy during the recent Canadian federal election. I do so at the federal level for the sole purpose of trying to ensure that all Canadians with serious autism disorders have access to Applied Behavior Analysis for treatment of their core autism symptoms.

I have advocated for over 15 years with other parents and with politicians like the late Fredericton MP Andy Scott who with Nova Scotia MP Peter Stoffer did manage to put autism on the Canadian political map with their joint private members' motion. The motion set out some directions for a federal National Autism Strategy, directions which have been totally ignored by the current Harper Conservative government and by their pet autism charity Autism Canada which has never contributed to the struggle by parents from BC to Atlantic Canada who fought for, and continue to fight for Medicare coverage of evidence based Applied Behaviour Analysis for those with autism disorders. Watching the Harper Conservatives and their charity Autism Canada continue to ignore the only science based autism treatment for autism can be discouraging but not defeating.

As long as I can have daily adventures with my son Conor, now 19, I will never quit, I will never stop fighting for the right things to be done to actually help people who actually suffer from autism disorders and related conditions. Conor has had some serious health issues in recent years with the full blooming of his seizure issues and dangerous adverse reactions to some seizure meds. Today though as we walked Fredericton's North Riverfront Trail that we have walked so often I saw something I hadn't seen in a while ... the Run Jump Fly Boy was back. He flew down the trail jumping into the air, both feet leaving the ground and enjoying life to the max. Then he sat on a bench with Dad for a few minutes soaking in the fresh fall air. And it made his old Dad and grizzled autism advocate feel good too ... very, very good and more determined then ever to continue fighting for meaningful, evidence based treatment for all persons suffering from autism disorders and related conditions.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.